'I am relieved': Quebec to cover ALS medication after repeated calls from patients

A drug known to treat amyotrophic lateral sclerosis, more commonly known as ALS, will be covered by Quebec’s drug insurance plan – a change doctors and those living with ALS have been demanding for years.

ALS, also called Lou Gehrig’s Disease, is a rare neurological condition affecting the nerve cells responsible for voluntary muscle movement, such as chewing, walking and talking. It’s progressive, meaning those symptoms tend to progress over time, until the brain is no longer able to initiate voluntary movement.

There are no cures for ALS, but there are treatments to slow its progression. One of them is Albrioza, typically taken dissolved in water or ingested through a feeding tube.

Amanda Tam has been living with ALS for about two years – she says she first started feeling off just days before her 21st birthday.

"A lot of twitching, grip strength was very strange, very weak. Doing exercise was very hard," she told CTV back in March.

Amanda Tam found out she has ALS four days before her 21st birthday.

Since her diagnosis, she has shared her experience on social media to show others what being a young person with ALS is like. Her videos, posted on TikTok, have garnered tens of thousands of views.

She had also been taking Albrioza, which had only been approved by Health Canada months earlier. She got access to it before others through private insurance. She was vocal about her success with the drug, and one of many calling on the province to cover it so that others could benefit from it too.

Even for her, access to Albrioza was precarious. The private insurance would only cover it while she was a student, and a prescription for the drug costs around $94,000 per year.

That was her reason for going public with her story back in April. Since then, she’s graduated from university, and pharmaceutical company Amylyx has maintained her supply, even without insurance.

And faced with Thursday’s news that other patients would have it covered, she said it gave her hope.

“I am pleased that the government is moving forward and granting patients with a terminal illness a medication they are entitled to have,” she told CTV in a statement, adding she hopes Quebec’s approval is just a first step.

“It is unfortunate that most patients with ALS still cannot access it, and it is frustrating since every person battling this disease should be provided with the medication they are intended to take,” she said.

“I am relieved, that's the most overwhelming emotion,” said Angela Genge, director of the ALS program at the Montreal Neurology Clinic. “Our patients in Quebec have been ambassadors for this medication.”

Tam has been one of those advocates and said that she hopes more people are able to get the medication covered in the future.

“Unfortunately, they are not covering those who are past their 18 months post-diagnosis,” she told CTV. “I am glad they are finally here to support those in need of the medication, but it is unfair to patients who have been suffering from the disease and still can’t access (it).”

Genge said its limited availability is a symptom of its trial process, and not necessarily final.

“When we're doing a clinical trial, what we're trying to do … is to determine whether a drug is truly effective,” she said. “In order to do that, you need the group on the drug and on the placebo to be as homogeneous as possible.”

She said that patients who don’t meet the 18-month criteria could still get the drug covered, they’d just have to go through different channels, which is something her clinic does regularly.

Until more people are covered, she said, “we’re going to keep on trying.”